IBD Crohn’s/Colitis

amother

OP ↓

Tue, Nov 12 2024, 11:09 am

Hi,
My daughter was relatively recently diagnosed with Crohn’s. I am desperately trying to get a handle on all the information out there regarding diet, meds etc. I have been in touch with the different referral agencies and with Jewish Crohn’s and colitis support group but there doesn’t seem to be any online forums where I can chat with other people who have personal experience and knowledge regarding the different issues involved. I would love to start a specific forum on Imamother for IBD. How can I contact Yael to ask her?

peacenine ↓

Tue, Nov 12 2024, 11:31 am

amother OP wrote:

You sound like an awesome mom.
I have crohns. If you have some questions I'd be happy to try to help.

BusyBoys ↓

Tue, Nov 12 2024, 2:08 pm

Hi!

Longtime Crohn’s diagnosis here.

Feel free to pm with any questions etc..

I’m in the Lakewood area if that helps..

One thing I encourage- have her join the MyTeam organization. Geared for teen girls with chronic diagnoses. I’ll be happy to connect you.

↑ anonymrs ↓

Tue, Nov 12 2024, 3:02 pm

BusyBoys wrote:

Can you share the contact info for MyTeam? Thank you!

amother

↑ Slategray ↓

Tue, Nov 12 2024, 3:08 pm

amother Navy wrote:

What are the signs and symptoms? Thanks

The first oddities were

Her hair not growing - it stayed thin and chin length as long as we could remember

Severe joint pain - especially her ankles

Then a few years later

Weakness
lethargic
Stomach pain
Refusal to eat sometimes
stopped growing in height and weight
Losing weight
Not regulating body temp well.
(Some of those could have been caused by malnourishment)

amother

↑ OP ↓

Tue, Nov 12 2024, 4:38 pm

Thanks, I will request. But I still think an open forum for this would be helpful to so many people if you could possibly make one.

Yael wrote:

We have a private group for mothers of children with serious health issues.
https://www.imamother.com/foru.....29353
You can request access to join.

amother

↑ OP

Tue, Nov 12 2024, 4:43 pm

Thanks to all the people who responded. I would love information regarding diet. I’ve read about SCD diet but it is so extreme and the data on it is not that positive. My daughter would not be open to such a restrictive diet but I’m wondering what else is out there and what has worked for people. Did anyone have experience with changing their diet that really helped symptoms?

↑ anonymrs

Tue, Nov 12 2024, 4:59 pm

amother OP wrote:

It's a major change in lifestyle but so worthwhile, in my experience. I know many people who are on this diet, some in addition to medication and some without medication. Either way, almost everyone I know who tried the diet, reports a huge decrease in symptoms.
Check out nimbal.org and breakingtheviciouscycle.info to learn more. I'd be happy to coach you through it, if you decide to do it. (No charge)

amother

Lightyellow ↓

Tue, Nov 12 2024, 5:05 pm

I have Crohn's for almost 10 years and follow the latest research. If I remember correctly, the only other (non-liquid) diet that supposedly helps is the Mediterranean diet. But it's really not instead of medication.
I would also be happy to join an ibd forum on this site.
Refuah shelaima!

amother

↑ Slategray ↓

Tue, Nov 12 2024, 5:07 pm

The problem with the diet is while it does decrease symptoms for almost everyone - almost everyone I spoke to had painful flare ups occasionally.

With the medication the flare ups are much rarer than while on diet. The medications today are so much better than even a few years ago. My dd has been on medication for years and is literally symptom free and lives and eats like her peers without a worry. That was important to us.
(And she has had severe reavtions to some of the drugs she was on, even hospitalized, but she still thinks it is worth it)

With a child you have to keep in mind growth and puberty. If a child isn’t thriving then it can affect growth for life and how puberty precedes so it is more important to have it under control then an adult.
Even know my dd is 14 and prob reaching end of puberty we are careful about changing things so won’t impact growth and puberty and development. That has been one of our main considerations.

Also if there is severe damage to the intestines you really have to heal that before the diet.
We were given the option of putting our dd on a liquid diet until her intestines healed and then switching to a diet to prevent further damage. (CHOP has a great dept and training for this) We decided as a family that both the liquid diet and control diet was not realistic for a girl in elementary school.

amother

↑ Lightyellow

Tue, Nov 12 2024, 5:16 pm

amother Slategray wrote:

Exactly! 1000%

↑ peacenine

Tue, Nov 12 2024, 6:52 pm

amother OP wrote:

Firstly, are you seeing a good doctor?

SCD helped me decrease my symptoms but it's not a long term diet. It's way too restrictive. After 3+ years on the diet I over ate foods that I knew weren't good for me because I was so restricted for so long.
For those reasons I really wouldn't put a young girl in this diet.

I think medication plus healthy eating habits is the best long term combination. Also focusing on lowering stress and dealing with emotions is very helpful.

According to my Doctor the research shows that the mediterranean diet is almost as effective as SCD and its way less restrictive.

amother

Tangerine

Tue, Nov 12 2024, 7:19 pm

amother OP wrote:

We saw a few GI’s and they all really discouraged any extreme diet changes. The medications nowadays are so effective with minimal side affects and in order for diet change to help it has to be pretty extreme at least in the beginning. I knew I couldn’t put my child through that if it wasn’t a guarantee of healing.

↑ BusyBoys ↓

Tue, Nov 12 2024, 9:31 pm

amother OP wrote:

The scd diet helped my symptoms tremendously and I was pretty much in remission for a long while. I was a young adolescent at the time, and my mom did all the cooking.. but it was exceptionally hard being so different from everyone around me. There is no cross contamination allowed at all. That meant no food in school, at parties, in camp. I can cry remembering it all.. and we kept it a secret.. so none of my friends were allowed to know why..

I think scd is a great option for an adult to choose independently. For themselves.

But as with any progressive disease, eventually I flared, then a few years later flared again. By now I’m on biological and couldn’t be happier bh. It’s still trial and error but so much less draining than the diet.